VIEWPOINT
Beyond prolonged grief: Exploring the unique nature of complicated grief in bereaved children
Martin Lytje
Center for Crisis Psychology, Faculty of Psychology, University of Bergen, Norway; Danish Cancer Society
Atle Dyregrov
Center for Crisis Psychology, Faculty of Psychology, University of Bergen, Norway
Abstract
This article argues that the current approach to diagnosing complicated grief in children overlooks important social and personal factors that impact how children react to and cope with death. Family dynamics, community support, and individual reactions should all be considered when assessing and providing care. The article recommends a multifaceted approach to grief diagnosis that considers the child’s social environment. Helping parents navigate their own grief can support their child, and schools should create a welcoming and sensitive environment for bereaved children. By addressing these factors, negative consequences, such as social withdrawal, academic underachievement, and poor wellbeing, can be reduced.
Keywords
prolonged grief, children, adolescents DSM-5-TR, ICD-11, measurement, social context, complicated grief, grief support
Implications for practice
•The current approach to diagnosing complicated grief in children overlooks social and personal factors impacting their reactions and how they cope with death.
•A multifaceted approach is recommended for grief diagnoses, considering family dynamics, community support, and individual reactions.
•Addressing the social environment, helping parents navigate grief, and creating sensitive school environments can reduce negative consequences and support bereaved children.
Introduction
During the past decade, many researchers have dedicated their efforts to understanding situations in which death demands professional intervention. These efforts have led to the inclusion of the grief diagnosis of prolonged grief disorder (PGD) in The World Health Organisation International Classification of Diseases version 11 (6B42 Pro-longed Grief Disorder) and a similar diagnosis in the fifth Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 2022). For the first time in history, grief is acknowledged as something that can turn into a disorder. These diagnoses, with some cautionary statements in their descriptive texts, include children (0–18 years old). However, although a significant body of research has confirmed the existence of PGD in adults, there is a scarcity of evidence to support its diagnosis in children.
This article examines the concept of complicated grief in children and argues this phenomenon may differ from that experienced by adults due to variations in experiences and context. We use the term ‘complicated grief’ to stress there may be other forms of complications that children struggle with, not just prolonged reactions in the form of preoccupation with the deceased and separation distress.
Several instruments have been developed to diagnose PGD in adults, such as the PG-13 Revised scale (Prigerson et al, 2021), the Traumatic Grief Inventory Clinician-Administered (TGI-CA; Lenferink et al, 2023), and the International Prolonged Grief Disorder Scale (IPGDS; Killikelly et al, 2020). Inventories also exist for children, more or less tailored to the new diagnostic entities (see Ennis et al, 2022 for an overview). Van Dijk et al (2023) recently published an article in which they present the Traumatic Grief Inventory – Kids – Clinician Administered (TGI-K-CA), a clinician-administered interview for youths between the ages of eight and 17. The authors should be commended for their approach to developing the inventory, which involved not only professional experts but also youths. Moreover, they modified the items to accommodate the cognitive abilities of children, for instance, by reframing negatively phrased questions.
However, applying such inventories to children raises concerns beyond the obvious issues of young children lacking the necessary introspection or vocabulary to answer introspective questions about their feelings, thoughts, and reactions (Clark, 2010; Zeman et al, 2006). In addition, it is debatable whether the current inventories adequately reflect the diverse forms of complicated grief in children The TGI-K-CA employs an item pool based on existing questionnaires for adults. We argue that we need to consider the unique situation of children.
A unique situation for children: beyond intrapsychic reactions
Children interact with their environment to make sense of family events. To process and cope with bereavement, children rely heavily on information, communication, and interpretation from the adults in their lives, whether at home, in kindergarten, or at school. A child’s responses reflect the web of interactions they engage in, and their social surroundings are crucial for processing grief and coping with death. However, the developmental information provided in the diagnostic systems for PGD is not very useful for distinguishing complicated grief reactions from normal grief.
When diagnosing grief in children, it is essential to consider their unique circumstances. Unlike adults, children rely on their parents to understand and manage their intense and often unfamiliar emotions. Support and responses from parents, caregivers, the community, and society at large (such as extended family, friends, school, and day-care) significantly influence a child’s experience of death and ability to cope with bereavement. Research studies (eg Dyregrov & Dyregrov, 2008; Winther-Lindqvist & Larsen, 2019) have emphasised the importance of such social influences in predicting a child’s coping following a bereavement. Recent work by Alvis et al (2022) further highlights reciprocal interactions between children and their proximal (such as family and school) and distal (such as culture) relationships.
During the introduction of trauma and Post Traumatic Stress Disorder concepts, there has been a tendency to transfer adult-model thinking to our understanding of children. Regarding grief, we must recognise that complicated grief, including PGD, in children is not solely an intrapsychic reaction but is significantly shaped by the child’s social context. Thus, we contend it is essential to account for how social influences impact children’s experiences of grief and to be careful not to use only adult-model thinking.
Historically, prominent childhood and youth researchers, such as Erickson and Coleman, have emphasised that childhood and adolescence are journeys towards adult-hood filled with struggle and uncertainty (Coleman, 1974; Erikson, 1968). In early infancy, children rely entirely on caregivers and protest when their needs are not met promptly. Bowlby (1969) emphasised the importance of positive attachment between parents and newborns for the child’s development, especially in the first two years, when the brain develops rapidly. Stress can impact childhood development (see Gee, 2022). The death of a caregiver can result in stress production in bereaved children during the peak of neuronal connection proliferation.
A child’s early development is shaped by interactions with parents, other adults, and peers, with the latter becoming increasingly influential as the child grows older. A range of studies has demonstrated how family, friends, and school support are highly important for a child coping with bereavement (see Wray et al, 2022 for an overview).
Luecken et al (2009) and Worden (1996) stress the importance of familial grief management and good parental care in mitigating physical and mental risks. According to Saldinger et al (2004), parenting practices that prioritise the needs of the child can also help alleviate symptoms of grief in children.
By fostering open communication within the family during a parent’s illness or following a death, it is possible to reduce the chances of bereaved children experiencing negative post-bereavement outcomes, such as social isolation, high-risk behaviour, and poor adjustments (Christ & Christ, 2006; Nielsen et al, 2012; Semple et al, 2022). Open communication in the family takes the form of openly talking about feelings, re-actions, and what they miss, as well as sharing new information when it becomes available (eg mortuary report). Revet et al (2021) propose that the parent’s response to the death of a partner and the quality of their parenting and relationships with their child could be the main predictive factors of PTSD and PGD following the death of a parent. If a caregiver’s own trauma and grief reactions (ie PTSD and/or PGD) reduce parental capacity, this may affect a child (eg by worrying about their parent(s), lacking open communication, or receiving inadequate care).
Schools and daycare institutions play a crucial role in supporting children, who spend much of their time in those places. Studies in schools (Levkovich & Elyoseph, 2021; Lytje, 2013) have found staff consider supporting bereaved children as important as fellow pupils do, but also that teachers are torn between caring and educational roles (Dyregrov et al, 2013). Although schools are supportive, little attention has been paid to daycare institutions (Chen & Panebianco, 2018). However, recent Danish studies (Lytje et al, 2022; Lytje & Dyregrov, 2023) have revealed that parents and children value support from daycare staff when recovering from a death.
As children grow older, friendships become more important. Studies have suggested that having supportive friends who can provide emotional support and distraction aids in coping with death (eg LaFreniere & Cain, 2015; Parsons et al, 2021), whereas avoiding discussing the death can leave children feeling isolated and different, and hinder their grief (eg Lytje, 2016; Weber et al, 2019).
The above studies support our argument that a child’s response to grief is greatly influenced by their environment, including the care and support provided by parents, caregivers, and systems, such as schools and healthcare. Although a child’s temperament and personality also play a role, the way grief is managed within the family or at daycare or school can significantly impact their grief trajectories.
The roles of family, community, and individual factors
With the evidence that children’s grief is influenced by external factors, it becomes imperative to determine which specific factors are most significant. Our clinical experience and presented research suggest that support from family and community, the bereaved child’s personality, and coping strategies all play important roles. These factors are further explored in the following sections.
Parents and caregivers
Family greatly affects the grief experience of a bereaved child. How the parent copes with the death of a partner or child (sibling) directly influences the child’s grieving process (Luecken et al, 2009; Worden, 1996). Communication breakdowns in deeply affected families may teach the child to keep the bereavement private. Conversely, if families cope with the death together, share memories, and communicate openly, these can help the child process their grief and signal that discussing the bereavement is acceptable (eg Lytje & Dyregrov, 2023; Saldinger et al, 2004).
Family secrets, a lack of information about the mode or circumstances of the death (eg suicide, murder, illness), insensitive caregiving, and a general lack of emotional support and communication can complicate grief in children. Such experiences can lead to PGD, suppressed grief, or other complicated grief reactions or mental health problems (Alvis et al, 2022; Lytje & Dyregrov, 2023).
Community
Reintegrating into daycare or school following a bereavement can be difficult for children, despite family support. Studies by Lytje (2016, 2017) have revealed that children often struggle to adjust and feel out of place in the classroom, which can lead to academic issues, such as lower school attainment (Dyregrov et al, 2022). The school community, including teachers and classmates, can play a vital role in providing support; however, both groups often struggle to know what forms of support to offer and how to offer them. Children may need guidance regarding interacting with peers and coping with grief at school, and daycare staff can provide extra attention and care in kindergarten.
Unfortunately, not all schools can provide such support, and some grieving children do not receive understanding from teachers and classmates, as noted by Dyregrov et al (2015). The level of support a child receives when they return to school can have a major effect on their ability to readjust. The community’s reaction can either ease or worsen the child’s grief and, in severe cases, lead to school avoidance and mental health difficulties. Therefore, it is important that schools acknowledge how death impacts children and are provided with the proper training and tools to offer the support children need to reintegrate (Dyregrov et al, 2020).
Personal factors
We have criticised focusing too much on individual factors in grief diagnoses, but personal factors do play a significant role in a child’s grief. These factors include age at the time of bereavement, temperament, developmental competence, and the type of death experienced (Kaplow et al, 2021; Lytje & Dyregrov, 2019).
The cause of death can also greatly affect a child’s grief experience; losing a parent to suicide versus prolonged illness can have different impacts (eg Guldin et al, 2015; Lytje & Dyregrov, 2019). Vulnerability factors also vary by age group, with very young children being more reliant on caregivers and older children facing communication and understanding challenges from family, community, and friends (e.g. Lytje, 2016; Lytje et al, 2022).
The coping strategies a child employs may also influence their experience of grief. For instance, a child who seeks support by talking about the bereavement may fare differently from a child who suppresses their emotions (Bylund-Grenklo et al, 2021).
Determining the long-term effects of emotional regulation on a child’s grief is intricate. It is vital to acknowledge that a child’s coping and emotional regulation methods are largely influenced by their social environment, including parents and peers. The child’s past experiences and coping strategies are developed via interaction with their social surroundings (Birgisdóttir et al, 2023).
Consequences of perceiving children as grieving in a social context
Our argument highlights the need for a comprehensive approach to assessing and supporting bereaved children, which includes considering family dynamics and the child’s school environment. Simply examining the child’s individual reactions is insufficient. For instance, if parents avoid discussing the death, the child will struggle to process emotions and communicate at school. The school environment and social interactions also play a role in promoting or impeding grief. Focusing solely on education neglects the child’s need for care and leaves them to cope with grief alone. A school that actively supports the child and helps them reintegrate into class can reduce the risk of the child feeling different from its peers (Lytje, 2017).
The current narrow focus on the child’s individual reaction in PGD diagnoses falls short of comprehending the intricate interplay of factors that impact their capacity to cope with death. To assist grieving children effectively, a comprehensive approach is necessary, considering personal, familial, and community factors. Although ICD-11 acknowledges developmental aspects of PGD, it fails to consider fully the social context, which may provoke or hinder a child’s response.
Conclusion
The diagnostic category for PGD aids in comprehending adult emotional reactions to death. However, the category’s relevance for children requires further research. A comprehensive approach that considers family, community, and personal factors is crucial for assessing and supporting bereaved children. Grief diagnoses for children must encompass the social environment’s role in complications. Equipping daycare and school staff, as well as parents, with the knowledge and skills to support the child’s return to the classroom is essential. Understanding the child’s unique circumstances can aid recovery and minimise adverse outcomes.
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